Website gives disabled needed info

'Sneak Previews' creator uses her skills in TV to aid those with spinal injuries

June 08, 2012|By John Owens, Chicago Tribune reporter

They are the faces and voices of survivors, answering important and sometimes personal questions about their life's adjustments in short video segments.

There's Steve, who became a paraplegic at age 23 in 2006, talking about the suicidal thoughts he had after he suffered a spinal cord injury. There's Tony, who became a quadriplegic at age 27 in 1990, going into detail about his long rehabilitation process and sex after his injury.

And then there's Carol Ann, whose son became a quadriplegic at age 20 in 1993, discussing the difficult first days after the injury, when she thought she'd lose her child. And there's Lisa Rosen, a program manager for the Rehabilitation Institute of Chicago, providing information about adjusting to life in a wheelchair.

These are among the more than 100 people featured in on-camera interviews for FacingDisability.com, a multimedia-rich website launched in 2011 by nine-time Emmy Award-winning Chicago broadcast producer Thea Flaum.

"We're like a virtual support group for people who have had spinal cord injuries," Flaum said. "The idea is that a viewer can come to our site and find a real person who can provide answers to very specific questions about spinal cord injuries."

What makes FacingDisability.com so unique is the breadth of information it provides to an online viewer. Flaum and her assistants created a list of 48 questions and then conducted on-camera interviews, not just with people who suffered spinal cord injuries, but also their mothers, fathers, siblings, spouses, children and experts in the field.

The questions ranged from the personal ("What was your greatest fear?"; "What was the hardest part of rehab?"; "Are you happy?") to the technical ("What are pressure sores?"; "What kind of surgery is common after a spinal cord injury?"). Flaum's group edited the responses into more than 1,000 individual videos on the site, which has answers to just about every question imaginable about dealing with paralyzing injury.

"We tried to keep the answers short and specific," Flaum said. "Of the more than 1,000 or so answers on the site, there probably aren't 25 that are more than a minute long."

Flaum, 73, has been a major force in local and national television over the last 35 years. She was the executive producer for PBS' "Soundstage"; created the first national parenting series, "Look At Me" with Phil Donahue; and had an independent Chicago-based production company. But she is best-known as the creator and producer of "Sneak Previews" with Chicago Sun-Times movie critic Roger Ebert and the late Tribune critic Gene Siskel, which premiered (as "Opening Soon … At a Theater Near You") on WTTW-TV in 1975 and began airing nationally on PBS in 1977.

FacingDisability.com is perhaps Flaum's most personal creation, because it's rooted in a personal tragedy in her family — in 1986, her stepdaughter, Vicki Hill, fractured her spinal column after diving into a swimming pool in Naperville.

"When I got the call that she had been injured, I couldn't believe it," said Robert Hill, Flaum's husband. "There was my 22-year-old daughter on a hospital slab. When I saw the X-rays that night, I knew things weren't going to be the same."

Vicki's story ended happily — despite being a quadriplegic, she ended up marrying, moving to Connecticut (where she works as a vocational rehabilitation director) and having a child, who is now 16. But Flaum and Hill never forgot the frustrations of being family members of a spinal cord injury survivor.

"It is an isolating experience," Flaum said. "Most people don't know anyone else who has had a spinal cord injury."

So when Flaum sold her production company in 2007 to former employee Dan Lombardi, she and her husband launched the not-for-profit Hill Foundation with the goal of creating a comprehensive, multimedia website for spinal cord survivors and their families.

The response from medical institutions throughout the world has been overwhelming.

"I think it's a fresh new breath in the disability community for disseminating important information because of its approach," said Bernadette Mauro, the director of information and resource services at the Christopher and Dana Reeve Foundation (and a spinal cord injury survivor). "In addition to providing great information, the videos give people the face behind the injury. You realize after watching these videos that life goes on."

"It's about as comprehensive of a site that we've seen," added Dr. Lee Ritterband, the head of the department of psychiatry and neurobehavioral sciences at the University of Virginia, which has utilized more than 50 FacingDisability.com videos for its own website.

The Rehabilitation Institute of Chicago, which provided many of the interview subjects for FacingDisability.com, was so impressed that they started working with Flaum on a similar website devoted to families of those who have suffered traumatic brain injuries.